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1,592 Data sources

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  • The EPSA | ERNICA Registry is to improve the quality of patient care by enabling health care providers to get insight in their outcomes and using the cumulative data from the EPSA registry to conduct scientific research, for example to compare treatments or identify certain risk factors for complications. The EPSA (European Pediatric Surgical Audit) registry contains information on diseases seen in new-born children, like: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Oesophageal Atresia, Anorectal Malformation, Omphalocele and Gastroschisis. ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies European Reference Networks and aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. ERNICA monitors and evaluates its activities in accordance with the ERN-wide monitoring framework of expert healthcare professionals from specialised healthcare providers across Europe. These networks seek to pool together the expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases. Each ERN focuses on a particular rare disease area with two diagnostic groups: Malformations of the digestive system (oesophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases) and Malformations of the diaphragm and abdominal wall (Malformations of the diaphragm and Abdominal wall defects) This standard defines the metadata required to insure availability, versioning and interoperability of the EPSA|ERNICA data.

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  • Online storage, sharing and registration of research data, during the research period and after its completion. DataverseNL is a shared service provided by participating institutions and DANS.

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  • The WHO has created a global clinical platform of patient-level anonymized clinical data. The Platform is a secure, limited-access, password-protected platform hosted on REDCap.

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  • International Dystrophic Epidermolysis Bullosa Patient Registry (DEB Register) provides phenotypic and genotypic information on DEB and the related COL7A1 mutations. The registry is intended to aid in disease diagnosis, genetic counseling, and discovery of novel insights.

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  • The PPEPDR contains information regarding the availability and security of sustainable supply of oil and gas for economic development and strategic requirements of Pakistan and to coordinate development of natural resources of energy and minerals.

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  • This site is a university repository providing access to the publication output of the Technical University of Eindhoven.

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  • The OpenNeuro project (formerly known as the OpenfMRI project) was established in 2010 to provide a resource for researchers interested in making their neuroimaging data openly available to the research community. It is managed by Russ Poldrack and Chris Gorgolewski of the Center for Reproducible Neuroscience at Stanford University. The project has been developed with funding from the National Science Foundation, National Institute of Drug Abuse, and the Laura and John Arnold Foundation.

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  • This site is an institutional repository providing access to the research output of the Delft University of Technology, including student dissertations and theses. The site interface is in English.

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1,592 Data sources
  • The EPSA | ERNICA Registry is to improve the quality of patient care by enabling health care providers to get insight in their outcomes and using the cumulative data from the EPSA registry to conduct scientific research, for example to compare treatments or identify certain risk factors for complications. The EPSA (European Pediatric Surgical Audit) registry contains information on diseases seen in new-born children, like: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Oesophageal Atresia, Anorectal Malformation, Omphalocele and Gastroschisis. ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies European Reference Networks and aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. ERNICA monitors and evaluates its activities in accordance with the ERN-wide monitoring framework of expert healthcare professionals from specialised healthcare providers across Europe. These networks seek to pool together the expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases. Each ERN focuses on a particular rare disease area with two diagnostic groups: Malformations of the digestive system (oesophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases) and Malformations of the diaphragm and abdominal wall (Malformations of the diaphragm and Abdominal wall defects) This standard defines the metadata required to insure availability, versioning and interoperability of the EPSA|ERNICA data.

    more_vert
  • Online storage, sharing and registration of research data, during the research period and after its completion. DataverseNL is a shared service provided by participating institutions and DANS.

    more_vert
  • The WHO has created a global clinical platform of patient-level anonymized clinical data. The Platform is a secure, limited-access, password-protected platform hosted on REDCap.

    more_vert
  • International Dystrophic Epidermolysis Bullosa Patient Registry (DEB Register) provides phenotypic and genotypic information on DEB and the related COL7A1 mutations. The registry is intended to aid in disease diagnosis, genetic counseling, and discovery of novel insights.

    more_vert
  • The PPEPDR contains information regarding the availability and security of sustainable supply of oil and gas for economic development and strategic requirements of Pakistan and to coordinate development of natural resources of energy and minerals.

    more_vert
  • more_vert
  • more_vert
  • This site is a university repository providing access to the publication output of the Technical University of Eindhoven.

    more_vert
  • The OpenNeuro project (formerly known as the OpenfMRI project) was established in 2010 to provide a resource for researchers interested in making their neuroimaging data openly available to the research community. It is managed by Russ Poldrack and Chris Gorgolewski of the Center for Reproducible Neuroscience at Stanford University. The project has been developed with funding from the National Science Foundation, National Institute of Drug Abuse, and the Laura and John Arnold Foundation.

    more_vert
  • This site is an institutional repository providing access to the research output of the Delft University of Technology, including student dissertations and theses. The site interface is in English.

    more_vert
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  • 5
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